Progress Made in Answers

Sometimes, I have to wait long periods for insurance approvals and then see what treatment I will be allowed to use. This week was not one of those times and progress was made on getting questions answered, but not sure on full solutions.

Tuesday was the first visit of the week. Jeff, a technician for my diaphragm pacemaker, flew in to Des Moines and arrived in my bedroom at noon, just as planned. I reiterated what I had experienced and he was soon off to work on my DPS patch.

While Jeff works on the wires, the system doesn't work and I have to breath on my own. I had anticipated a lengthy time of breathing exercise, but just two three-minute periods was all he needed. The old silicon that had become like glue was removed, wires inspected, and new silicon added for protection. He said it usually happens when the patch gets wet. I couldn't think of a time it had, but noted to be more aware of it.

The repair maybe took 10 minutes total. I have seen Jeff a couple times in my 15+ years of using the DPS and we always got along well. After another 30 minutes of getting caught up, he headed back to the airport to catch his flight home. I don't know how his company does these maintenance visits so easily, but I'm very appreciative of them.

Thursday evening, I emailed my wheelchair tech to see if I could get scheduled for a pressure mapping of my chair. After a few messages Friday morning, he was in my room that afternoon with the needed equipment. My day caregiver had called off sick, but thankfully dad was available to move me around.

First, he noticed my chair's seat cushion was low on air, even though it had been pumped up a few weeks ago. Submerging the cushion in my parent's bathtub confirmed no air leaks, so it was dried off and further inflated. After I was sat in my chair, the cushion was partially deflated to its optimal thickness. Testing with the mapping system showed everything looking good.

Unlike last November, I also asked to test my bed while sitting. It took a few tries to get the system properly placed, but it did reveal increased pressure in the area I'm having trouble. The colors didn't look bad to me, but he recommended sitting in bed for 30 minutes at a time, 45 at the most. My usual schedule is 1-1.5 hours of sitting and then flat for the same period. That already makes it difficult to get work done, cutting time down further will be very hard to do. I could possibly do more while in my chair, but my computer and everything else isn't setup for it.

As of this writing, I haven't changed my schedule much, but have shortened upright time a little. I'm scheduled to preach the next two weeks and will have end/beginning of the month items to do for web work. As I always say, living the quad life has challenges. No matter what, I will rely on God's guidance and strength to get through.

Chair Repair

It has been over two months since I got my new chair. In that time, and after three miles of driving, I have noticed areas that need work. This week, two technicians came from my chair provider to address some of the issues.

First, my caregiver and I noticed my legs were not sitting straight and my feet wouldn't lay flat. As long as I can remember, my legs have flopped out to the sides, like frog's legs. It's fine in bed, but it doesn't work when trying to sit. Therefore, I have had knee supports that keeps my legs from going out too far.

After some fairly significant adjusting of the supports, my legs were straight once again. Next, moving my foot rests up about an inch allowed my entire foot to lay flat and be supported. My caregiver and I were very pleased to see the improvement and my lower body aligned properly.

Another concern that my parents noticed was this chair's lack of a strap for chest restraint. I liked not needed another device to stay straight. However, I researched through my local law enforcement and we both discovered a chest restaurant is required for wheelchair users in vehicles. The solution is now a strap that can go over my front when needed, but easily left off as well. Unfortunately, not everything else could be adjusted.

When traveling, my mom and I noticed the chair wants to tip over when making right-hand turns. I explained the situation to the techs, but they had never heard of such an issue before. Looking at my van's straps for the chair, they thought it could be due to where I sit and that I can't be restrained from the side. The only suggestion was to only tilt fully when highway driving, and sit upright when in town. A visit to someone who does wheelchair restraints could also offer solutions, but that was all.

As time has passed, I've also noticed I'm not sitting as well as at first. My right arm seems to be elevated and just not sitting right at a good angle. Again, the techs were at a loss for further arm rest movement. Dad tried moving it Saturday, but I have yet to sit in the chair and try his change.

I had hoped to have all concerns fixed at this point and enjoy my new wheels. Unfortunately, it still has some challenges and is starting to get uncomfortable to sit in. I was looking forward to my first time preaching this spring and be able to get elevated for the crowd. Now, I'm beginning to wonder if my previous chair may be better suited. So far, nothing is scheduled, so I have time to adjust and consider. Such is the quad life.

Tomorrow, I'm also waiting to hear if my funding for nurses can be approved for February. I filed an appeal, but it will take time to decide on when to be heard. Until then, I continue to rely on God's timing and grace for my needs.

Learning More and Preparing

It is the first weekend of December, and it's feeling like a repeat from last week. We received more snow yesterday and the night nurse wasn't able to come. I pray this doesn't become a trend until spring. Thankfully, this week was fairly calm and provided time for work and learning my chair.

When my chair was dropped off a few weeks ago, my caregiver and I checked if my feet would reach my bike petals. They did, and we left it at that. This week was my first time actually biking while sitting in my chair, and it took some trial and error.

I started using the FES bike in July 2015 with my Action Arrow. In August that year, I received my TDX SP and used it for every bike session since. Therefore, we expected to have a learning curve in using the new wheels.

First time biking

Thursday took nearly a full hour of adjusting electrode placement, testing wire reach, and seeing how to access connections. Getting the four electrodes on my glutes was the biggest challenge. We quickly discovered that the placement we used for the last decade won't work, but further on my hips did. Eventually, after some popping knuckles and wrists, my caregiver and I figured it out. Friday went more smoothly, but we still have a few areas to adjust.

Since early November, I have been putting drops in my trach button to try to open the plug at the end of it. They have helped some, but the month of use hasn't completely cleared it. In some positions, it's just as blocked as it always was. It is also making suctioning very difficult. The catheter can get through, but any junk it picks up gets scraped off by the flap at the end of the button. Friday night, my caregiver tried clearing my lungs twice, but wasn't successful. I was eventually able to clear it on my own, but that isn't always the case.

This coming Thursday, I am scheduled to have surgery to open up the trach stoma again. The last time I had surgery on my trach area was around third grade. I'm thankful it has been over 30 years since I needed more serious work on it, but it is still frustrating to need intervention. Since I have full feeling of my trach area, it will also be one of the very few procedures I've had that I will fill the aftermath. I don't expect it to be anything major, but still a different experience.

Even after 40 years of living the quad life, I learn new things. Heading out to Des Moines in December is also something I haven't done in many years. Whatever may come, I know God is in control and I look forward to my neck being fully open again as it should.

Snowy Weekend

The warm days we had earlier this month are gone and winter has arrived. Thanksgiving day was cool, but pretty good for late in November.

It was a rare occasion in that I actually went to someone else's house. My aunt and uncle invited us over for Thanksgiving, so we headed west after church. Their house does not have a level entrance, but a couple wooden boards and a metal plate allowed me in the front door. Since my steering isn't very smooth on my new chair, I opted to use my older seat with better control. I'm never real comfortable in someone else's home, I am afraid I'll hit something or not fit their tables. Thankfully, everything went well and we had our Thanksgiving meal with family.

Late Friday evening, snow started falling and went through most of the day Saturday. My Thursday night nurse was talking about coming early Friday to avoid the weather, but she ended up not coming either Friday or Saturday.

I have heard this winter is supposed to be cold and snowy. With more snow predicted tomorrow, it's starting to look like the predictions may be true. We never want my caregivers to put themself in danger by driving on bad roads, so we understand when they can't come. Even though we somewhat expect it when the weather turns bad, it still is a challenge to cover.

Since last week's entry, I have spent more time in my new wheels. I'm somewhat getting used to the differences, but we uncovered a potentially dangerous scenario I need to be careful to avoid.

When I travel, I normally tilt my chair back about as far as I can. Even for short trips, it's a good opportunity to shift my weight and seems safer if we got into an accident. With my new seating system, the entire seat raises up a few inches as I tilt, making my head close to the ceiling.

On my first trip outside the house, I did the same routine I always do. However, as the vehicle turned corners, my chair seemed to move and not feel very stable. Right-hand turns felt especially uncomfortable and I wondered about the seat's connections. On our final right turn, I asked mom to watch my wheels to confirm my suspensions. She said the right wheels came off the van floor about two inches. Therefore, it gets top heavy easily and has good potential to fall over. For my subsequent excursions, I hardly tilted and didn't notice any further trouble. I'm not sure if the problem can be fixed, which isn't ideal for trips more than a few minutes. 

Such are the challenges of the Quad Life. This was not an issue I thought about before this week, but one that is now at the top of my mind. This week looks cold and I plan to stay home, so that will allow more learning time at least. 

Giving Thanks for Progress

Once again, we have reached late November and will soon celebrate the official day to give thanks. Personally, I find the easiest thing to do in prayer is give God thanks for all He has provided. Without Him, we would have nothing, not even the air we breathe, heart beat, or life.

This year, I was thankful to be able to take a trip east to see friends at CHAMP Camp and visit the Creation Museum and Ark Encounter again. The mold in the hotel air conditioner wasn't fun, but it was a reminder to give thanks for times of good health and easy breathing.

A big item of progress happened Friday. I ordered my new wheelchair in May and first sat in it in late October. The chair company completed all the adjustments and brought it to my home. The first order of business was to do a pressure map of the new seat cushion.

Map from 2019 showing issues

Pressure mapping involves sitting on a thin pad full of sensors. It is then displayed on a computer or tablet and shows pressure areas. Light to medium blue is ideal with yellows and reds indicating problem areas, somewhat similar to a weather radar. It normally takes doctor's orders, scheduling an appointment, and traveling somewhere to get it done. This time, it was part of the chair setup and done right in my bedroom. If I had thought about it, I should have tested my bed mattress, but I didn't until well after the technician left. I was thankful it could be done and the new seat tested very well without any changes required.

Some button changes had been made since I last saw the chair, but they were soon adjusted and I had my first opportunity to drive. As I expected, the tiny joystick is much more sensitive than I'm used to and has very little range of movement. Therefore, the slightest change translates into a larger or jerkier movement than desired. As I navigated through my room and down the halls, I kept it in a low speed setting and managed not to hit anything, or anyone. Learning the different seat functions will also take time, but I'm thankful for the technology God has given us to accommodate fallen bodies in this world.

Friday was also fully covered by caregivers and allowed my parents to get away for a full day. Shortly after getting home, dad discovered my new chair is three inches longer than the one I've been using. This could make for a tight, if not impossible, fit for the tie downs in my van. Thankfully, alternate restraining systems do exist, but it would have to be researched and installed. As of this writing, I have yet to test getting in the van.

While more challenges come, the areas of thankfulness can outweigh them. I'm thankful for all the years I have been given and experience God's blessings. May you have a Happy Thanksgiving and see what God has done.